I am glad you have posted information here. I think you will experience more interaction in this forum. I know I don't always look in the introductions forum when I do sign in. I am more apt to see thread titles from various forums. I hope you will gain some helpful feedback and lots of support here.
The activity level on the site changes daily. Some days are more quiet. Often, responses come in over a few days to a week. Some very insightful and supportive people will likely read your post and will likely respond.
Thanks for the information you have posted.
My response to you in the intro. forum:
" I am sorry your daughter has been suffering.
As a mom, her suffering must also be sad for you.
My heart goes out to each of you.
I feel it's very important your daughter have a full work-up in a Neurophysiology Lab. More specifically, please look into Neuromuscular testing, like: EMG, NCV and whatever else a Neuromuscular specialist feels is helpful in diagnosing the cause. Neuromuscular specialists often recognize symptoms and signs not otherwise readily recognized by a General Neurologist.
There are various types of dystonias, myotonias, and other neurological conditions (Neuromuscular and Movement Disorders) which can show up at any age. Just one example (of many): http://www.ninds.nih.gov/disorders/d..._dystonias.htm
I hope your current Neurologist and/or Primary Care Physician will help in quickly referring your daughter for this type of an evaluation.
While I hope your daughter's does not suffer one of the complicated conditions, the accurate diagnosis of the cause of your daughter's condition is very important. Hopefully, an accurate diagnosis will lead to treatment targeted at the cause.
Symptomatic treatments can help; yet, often are not specifically targeted at the cause. These types of treatments are usually determined by what gives her some relief and not too many side-effects. Symptomatic treatments can be allopathic, integrative, physical therapy, etc. Any symptomatic treatment which gives her relief, without too many side-effects, is important. It's critical to also find out the cause of her suffering, as doing so may lead to more specific treatments which may help her more than simply treating symptoms.
Is there a Neuromuscular Clinic within the Neurology Department nearby?
Is there a Children's Hospital nearby?
Is there a teaching hospital nearby?
I hope you will start an ongoing thread in the forums below. I have questions and am reasonably sure other members may have questions/information to share with you. I think we can help in supporting you in finding more assistance for your daughter. "
As a re-read, I am glad your daughter is also obtaining a comprehensive orthopedics consult.
Did your daughter experience any injury to her head (as in bumping her head) just before this had all started?
Has your daughter had EMG and/or NCS testing in a neurophysiology lab?
These two tests are briefly described here: http://www.hopkinsmedicine.org/healt...emg_92,p07656/
Neuromuscular disorders (dystrophic and non-dystrophic) and movement disorders may initially show up intermittently.
(I know this because it has taken many, many years for neurologists to pick up on mine. I'd had many years of rather severe exacerbations which would come and go. By the time a neurologist could see me, often months later, the exacerbation had quieted down. I had a physical therapist working with me and she was stunned with the intensity and frequency of spasms. When she could get them to release, the release was for a very brief period -- As in a couple of hours, at best. My neurologists had tunnel vision and could only see the prior Neuro diagnoses they had made. They had finally started listening and looking in these other specialized areas of Neurology once they saw me in an intractable state of spasticity and in a "Neuromuscular Crisis" in the E.R. This had happened only because I had refused to leave the ER without a Neurology consult. The PA was going to discharge me because my electrolytes were normal.
I could not use/control my hands, could not use my feet. I could not walk or even feed myself, shift my pillows, etc. The Neurologist walked in and knew immediately, due to the signs he could see as he had entered the room, during this specific exacerbation. This then led to immediate conference calling between specialists in Neurology and also led to rapidly scheduling testing. In the meantime, the Neurologists were better able to help me with my comfort level. Persistence is key.)
It's very important to have a doctor examine your daughter during an exacerbation, if possible. In some settings, we can ask: "How can my daughter be seen as quickly as possible when symptoms/signs are most exacerbated?" Some specialists have a helpful answer for this question. Some do not.
In cases where doctors seem unsure of what's going on, it's important to keep some form of a diary of symptoms and severity of symptoms. Trials of approaches to quiet the symptoms, to make your daughter more comfortable, may also be noted. Over time, when many different approaches have been tried, it can be difficult to recall what was tried and whether or not it was helpful. This can also be important information for doctors to consider in helping them to reach a correct diagnosis. Some people make some daily notations, some make weekly notations. I take these diaries with me or read through and make sure I have a comprehensive outline of all that has transpired since my last visit with any specific specialist. I also look for any "patterns."
I don't want to overwhelm you with too much information or too many questions at once.
We have some very insightful, deeply compassionate members here. Many are awesome parents, as well.
I do want to acknowledge your efforts to take good care of your daughter, your efforts to help her, to advocate for her. I know we all tend to think it's "just natural" and any parent would do so; however, I have seen many cases where parents do not actively advocate for their children, do not seek information and support, etc. Thus, I have deep and sincere admiration for parents like you.
I hope you and your family are enjoying the weekend.